Sarcoidosis

About this project

This patient priorities project has a focus on sarcoidosis.

We want to help raise awareness of what matters most to people with experience of sarcoidosis and to develop patient-led information and guidance based on these findings. This website is one of the end results of the project.

Patient advisory group

People with experience of sarcoidosis, either as individuals diagnosed with sarcoidosis or as sarcoidosis patient organisation representatives helped to steer the direction of this project through our patient advisory group.​

Ana-Rosa Alvarez Rodriguez

Asociación Nacional de Enfermos de Sarcoidosis

Rita Barriuso

Asociación Nacional de Enfermos de Sarcoidosis

Mindy Buchanan

Foiundation for Sarcoidosis Research (FSR)

Ana Ciganovic Katic

Serbian Association of Sarcoidosis

Johann Hochreiter

Lungenfibrose Forum Austria

Chris Knoet

Sarcoidose.nl

Filippo Martone

Amici contro la Sarcoidosi Italia ONLUS

Dorrit Novel

Swiss Sarcoidosis Association SSARV - AScS

Gérard Novel

Swiss Sarcoidosis Association SSARV - AScS

Bernd Quadder

Deutsche Sarkoidose-Vereinigung e.V.

Jack Richardson

SarcoidosisUK

Gianluca Ziosi

Amici contro la Sarcoidosi Italia ONLUS

Medical experts

Healthcare professionals with expertise in sarcoidosis helped to ensure the information on this website is medically accurate.

Dr Marlies Wijsenbeek

Professor Dr Violeta Vučinić

Global collaboration

The patient advisory group has been involved in a range of projects:

Representatives from the patient advisory group have been members of the ERS Sarcoidosis Treatment Guideline working group which is due to publish its recommendations in September 2020.

An article by the sarcoidosis patient advisory group: Sarcoidosis: patient treatment priorities was published in ERJ Open Research in December 2018 and highlights the findings of our patient survey, the findings of which will be reflected in the final guideline.

In 2015, patient organisations in the ELF patient advisory group identified the most important priorities/issues for individuals with sarcoidosis in the areas of diagnosis, treatment, follow-up care, education and communication.

In 2020, these findings were used to create a sarcoidosis patient journey as part of the activities of ERN-LUNG. This journey represents the views of the patient community. It will be used to inform clinicians about the needs of people with sarcoidosis at different stages of their journey.

The ELF sarcoidosis patient advisory group members were invited to attend the Management of Sarcoidosis and Interstitial Lung Diseases conference in Belgrade from 22-24 April 2019 by Professor Dr Violeta Mihailovic-Vucinic, President of the Respiratory Society of Serbia and Serbian Association of Sarcoidosis.

The meeting was organised by the Respiratory Society of Serbia and Serbian Association of Sarcoidosis with the aim of bringing specialists together to share and learn about new insights into the diagnositc and therapeutic approach of sarcoidosis and other ILD. Members of the group were also invited as speakers to highlight patient experiences of sarcoidosis. ELF sarcoidosis patient advisory group attended all sessions and also held their own patient meeting during the conference.